🌿 Chapter 4 - The Long Middle

This is the part nobody warns you about.

Not the diagnosis.

Not the end.

But the long, stretching middle.

The routines became my life:

dispensing her medication
meal planning, shopping and cooking
coping with her repeated questions
understanding her changing moods - and mine
planning and learning

For me the hardest part was the endless thinking about what to do next. What is best for her. And is that best for me? Is there some other medication that might help? Is my mental strength sufficient to cope - and is there help available? Should I be thinking about physical aids in our apartment? Can friends and family help - and if so, how?

It was during this phase that I started planning ahead.

We talked about the possibility of a care home/nursing home and I suggested to Jackie that we visit some while she was still sufficiently aware. The idea wasn't to start moving her into a home, but to find out what sort of home she felt would be appropriate. A couple we visited were dominated by rows of old people asleep in high backed chairs. Another would have been difficult for me to travel to. Each had their levels of support. We asked if they had 24 hour trained nurses on site. Could she bring in her own furniture? We asked to see menus and activity schedules, visiting arrangements, outings. What would happen when she needed nursing care? What opportunities were there for respite care?

Without making any commitment, we both agreed that one particular one was our favourite.

Thinking about care homes brought up the question of paying for the services. This is a minefield. Getting anyone to discuss what the council might contribute and what we would have to add was impossible. I could only get some general advice and I was left not knowing what was my position.

It was during this period that we started an endless cycle of going to the GP to explain the evolving scenario. Our GP would only allocate 10 minute slots and these appointments would invariably end up with the promise of a referral to a consultant, but of course there would be a time lag of weeks or months. Invariably the result of a consultation would be, in summary, 'She has dementia and there is nothing we can do.'

On a positive side I encouraged Jackie to attend a Dementia Cafe on a regular basis. Our local one had an exercise class, followed by tea and cake, followed by entertainment (a singer, a quiz, a talk etc). She enjoyed this but it didn't result in any friendships.

On my side I was invited by MIND to join a group of a dozen people all caring for dementia patients. This was a 12 week series of two hour sessions, moderated by MIND, in which we shared our experiences, good and bad. I found this invaluable.

But in listening to the others in the group I realised that my journey was significantly different to theirs. Jackie wasn't forgetting who any of our family and friends were. She only went wandering the once. She was losing weight and struggled to form words, but her longer term memory didn't seem to be majorly affected. She had started to have difficulty with writing. But there was no bad behaviour. No regression into a child like state.

Back to the GP. Is this Alzheimer's? Or is it something else. Another long wait and a visit to a consultant. It might be something else and we might be able to do some tests but it won't change the outcome.

More reading on the internet and I concluded it could be a subset of Frontotemporal dementia. And after finding that bit of information I pointed out to the GP that a drug she was taking for Alzheimer's was considered counter-productive for this possible diagnosis.

How frustrating was this. I was becoming much more aware of current research and thinking about dementia than the GP.

It was a marathon without a finish line.

There were moments of humour—Jackie could still be wonderfully funny even deep into her illness.

She was still in charge.

There were moments of heartbreak—simple tasks becoming impossible.

There were moments of exhaustion—physical, emotional, existential.

This stage lasted years.

If you are living in the Long Middle now:

you are doing far more than you realise.

And you are stronger than you feel.

Next: Chapter 5 - When Things Got Harder

Previous: Chapter 3 - What We Did Next